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Life Changing Modulators- Mitch’s Story

We share some stories from WA members on the life-changing effects of the new modulator treatments.

Mitch Messer recently celebrated turning 60. He also celebrated eleven months on Trikafta®, the life-changing modulator.

When Mitch first started taking this drug, he said he coughed for two days, purging mucus from his lungs. He then felt very different; he could breathe better, and over the next two weeks he noticed that his exercise tolerance had increased.  He could walk without being breathless and needing to stop. He also began to enjoy food again, developing a good appetite. Before this, he said eating was tiring.

Before Trikafta®, Mitch’s lung function was in the low 30% range. It is now back above 40%, but it’s more than lung function he says; “I just feel so much better”.  He has had no exacerbations since December 2019. Previously, he was in hospital 2-3 times per year. He has not had an admission since starting Trikafta®. Last year was the first time in over a decade that Mitch was able to get over a cold without ending up in hospital on IV antibiotics. His visits with the transplant team at Fiona Stanley Hospital changed from every three months to an annual visit just to touch base and make sure everything is going OK.

There have been a couple of side effects though. A rash on his shoulders, arms and back which he used antibiotics and steroids for. It can be really annoying and itchy but he does like being able to breathe, so it’s a fair trade-off. About 10% of people using Trikafta® report this as a side effect. Sometimes he says he feels tired; it’s hard to know when it’s going to happen – he will suddenly feel super tired and need a sleep and it’s a deep sleep that could be up to two hours. He has also developed a lot of joint pain.

The positives outweigh the hassles though. Before Trikafta®, he struggled to take the rubbish out, it was an effort to shower and dry himself; now these things are just like they were ten years ago. He said it’s hard to explain how different he feels. His quality of life has improved exponentially, feeling more positive and learning to trust this as his new normal.

Mitch is looking forward to the future with Anna, his partner. They now have the option to start thinking about the things other middle-aged people do, like travel around Australia; to think about retirement being a positive thing, not an end of the road, as it was looking before. The fact that he now feels that he has the chance to be fit and well when he retires is incredible. It is great not to feel so restricted and tethered to a hospital which is how he felt before.

The new CF modulators are the biggest change in the world of CF that he has seen in his lifetime. There has been a huge improvement in CF care over the past 60 years however, most of these have been incremental, shifting the dial a bit at a time. The modulators appear to be bringing an exponential change. It seems they have the potential to move CF from being a debilitating, chronic disease to something far more manageable. They are not a cure, but they will give most people with CF the opportunity to live long, healthy, and happy lives.

While Mitch has benefited from his year on Trikafta®, he is aware that he has been extremely lucky and that while this is a huge move forward, it will not be for everyone and that not everyone will get the full benefit. We have to keep working so that ALL people with CF get to experience the benefits of new treatments.

Mitch talks about how sad he feels that these life-saving drugs are so expensive and would like Vertex to reduce their prices to increase future access to new and improved drugs for the whole CF community, not just those who live in countries that can afford them.

Mitch’s current roles include: Vice President, Cystic Fibrosis Australia; Trustee, Australian Cystic Fibrosis Research Trust; Consumer Advisor, BEAT CF; Consumer Advisor, CFWA Adult Community Focus; Member of the WA Adult CF Centre Consumer Advisory Committee.

 

Interview from RED Magazine, Edition 1 , 2021.


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